Missing a Cancer Diagnosis

Stories of misdiagnoses circulate throughout the testimonies of people contending with all sorts of cancers. Such errors, made by patients as well as doctors, bring in their wake a sense of betrayal, self-recrimination and anger. Should we accept them as inevitable?

Like many women, I misinterpreted the muted symptoms of ovarian cancer. Bloating, satiety, fatigue and constipation are often attributed to menopause, aging, indigestion, irritable bowel syndrome, depression, laziness or whining. My general practitioner prescribed half a cup of wheat bran, applesauce and prune juice every day. By the time a CT was ordered a year later, the cancer had progressed to an advanced stage that is treatable but not curable. I was furious at myself and upset with my doctor.

People leading active lives seem especially prone to dismissing subtle warning signs. The philosopher Gillian Rose declared, “I was so attuned to regular exercise of body and mind that I could easily take minor symptoms of ill-health in my stride.” Similarly, the physician and marathon runner Dr. Geoffrey Kurland deceived himself about symptoms of leukemia: “I now realize that for several months my body had been giving me warnings I had chosen to ignore, warnings that something was not right with me.”

Physicians are particularly likely to miss a cancer diagnosis in the case of young adults. According to S. Lochlann Jain’s book “Malignant,” “doctors often work under the misguided assumption that cancer is a disease of older people, leading to an immorally high number of delayed diagnoses and, in turn, the large proportion of late-stage cancers.” When she received a late-stage breast cancer diagnosis in her mid-30s, Professor Jain turned to the tort system because her doctor had first refused to biopsy a lump in her breast and then ordered a fine needle aspiration (rather than a more reliable core biopsy). A false negative deferred treatment.

One 2013 study, undertaken by the National Coalition on Health Care along with Best Doctors, Inc., found a disconnect between what cancer specialists assume to be the case about physician misdiagnosis and the facts of the matter. A majority of the 400 doctors in the study believed that from zero to 10 percent of patients are misdiagnosed; however, research indicates that the actual figure may be as high as 28 percent. I suspect that patients would put the percentage higher.

There are, of course, numerous causes of misdiagnosis: physician overconfidence or complacency, insufficient time with a patient, unreliable detection tools and poor pathology protocols, knowledge limited by over- or under-specialization, fragmented informational systems, and patient inattention or repression. But regardless of cause, the results can be catastrophic.

Ironically, the fate of a sociologist who studied endemic medical errors illuminates the consequences of a misdiagnosed sarcoma. Marianne A. Paget’s physician in Illinois failed to order a chest X-ray in the course of investigating the source of her back pain. And then a Florida physician misread an X-ray as normal. Ms. Paget first experienced symptoms in late 1987. It took eight months to get the cancer diagnosis. Despite extensive treatments, she died in Dec. 1989, at age 49.

Misdiagnosis can result in devastating surgical blunders, too. A friend’s sister, Lisa, underwent surgery for what her doctor assumed was a benign ovarian cyst, which he removed. He saw a suspicious area on the second ovary and — without waiting for the pathology report of the frozen section — cut into it. It turned out the lesion was cancerous and, by slicing into it, he had released cancer cells into her body.

A senior surgeon stepped in and successfully completed a much larger operation than had been planned, then insisted that the first surgeon tell Lisa what had happened. Lisa was horrified by the first doctor’s “huge mistake,” which “increased the risk of recurrence dramatically.” But the honesty of both doctors allowed her “to keep a sense of trust in them.”

Lisa uses the word “mistake” when she talks about her first surgeon’s error, avoiding words like “incompetence,” “negligence” and “malpractice” that suggest culpability, dereliction of duty, violation of professional standards, and the legal assignment of blame. In contrast, Professor Jain points out that legal recourse, and in particular “lost chance” claims, which establish the difference in prognosis if the cancer had been found sooner, can be used to raise doctors’ consciousness about cancer’s occurrence in younger people and help patients gain compensation for expensive injuries that are irreparable. Missed diagnoses make up a considerable proportion of malpractice claims.

But how many of us have the strength, or the money or expertise, to manipulate complex legal systems and take on the burden of proof in order to protest bungles that continue to exact their toll in suffering? And since patients make mistakes, too, we often concede that they arise less from irrevocable faults in our physicians, and more from the fallibility of medicine. “To err is human; to forgive, divine,” as the poet Alexander Pope put what has since become a platitude: mistakes happen.

In my all too human way, I struggle to forgive the honest mistakes of my doctors who are also mere mortals. Sometimes, though, I have trouble forgiving myself.